Aa
Looking for Help
Hi Everyone,
Thank you for taking the time to read this as it is going to be long.
My boyfriend of was diagnosed with Lyme Disease almost 3 years ago after feeling joint pain and lethargy for a couple months. We remembered pulling a couple ticks off of him a few months prior in the spring, but didn't think much of it as a rash wasn't noticed. His Primary Care doctor prescribed him Deoxycycline for 3 months. He started feeling better after a couple of weeks. But being the freshly turned 21 year old that he was, he would irregularly take the antibiotic, opting to go out with his friends and drink, going days without taking his medicine. But overall he felt much better until about 6 months later when worse symptoms returned in full force. The fatigue, muscle and joint pains, constant thirst, memory and concentration problems and an overall "brain fog" with nasty headaches consumed him and still does to this day. We have been to MANY MANY infectious disease doctors over the past 3 years and no one believed it was Lymes because he didn't come up positive for the standard test. But he has been steadfast in his belief that he does have Lymes as he feels the same but worse than he did when he was first diagnosed. He has also had high liver levels that come up on his blood work and high blood pressure. We have been told that he has everything from chronic fatigue syndrome, to diabetes to hepatitis c. And we have been told by multiple doctors that Lyme Disease does not exist.
He has suffered for so long his symptoms seeming to get worse each month. When he had a fever for over a week, we got to the point where on June 28th of this year we took him to the emergency room. He immediately tested positive for mononucleosis and 2 days later we got a call that he also tested positive for Lyme Disease. The first appointment we could get with an infectious disease doctor was today and he left sobbing because the doctor told him that Lymes doesn't exist.
We are at our wits end and would appreciate ANY advice and if any one knows of a Lyme Literate Doctor in the Philadelphia Pa area please let me know. Cost and insurance are not an issue at this point we just want him healed. On top of everything else, he has also lost 40lbs, has developed anxiety and depression and his short term memory is EXTREMELY poor.
I know this disease isn't a myth and I am determined to do whatever it takes to cure this nasty disease.
Thank you. I wish you all peace & wellbeing.
He needs to take all medications given when he finds his LLMD. I was misdiagnosed for 25 years and have paid a heavy price as everything is worse.
Welcome to MedHelp Lyme -- I am very sorry to hear about what your boyfriend is going through, and the effect it has on you and on his family as well.
There is much misunderstanding about Lyme in the medical community, and the important thing is to find an MD who really does understand how to diagnose and treat whatever illnesses your boyfriend has. There is a huge split in the medical community about Lyme generally, including how to diagnosis it and treat it. Many of us here were also misdiagnosed or ignored, so we hear you.
The primary care doc who prescribed doxycycline for 3 months did more than many MDs would, but there are aspects of Lyme infection and treatment that do not respond to doxycyline. 'Doxy' can be effective against Lyme, but ONLY if the doxy is given very early in the infection, and sometimes the person may have been infected with Lyme a while back, but didn't feel really awful and so didn't know that s/he was ill and not just run down from overdoing it at work or school. If it happens that doxy is not given very very soon after the initial Lyme infection, the Lyme bacteria will hide in areas (like cartilage) where the immune system cannot 'see' the Lyme bacteria to kill them all.
Sometimes a patient with a strong immune system and a lot of determination can carry on in life, just feeling dragged out for weeks or months or longer, not knowing that s/he has a Lyme infection. It sounds like that happened to your boyfriend -- you say: "My boyfriend of was diagnosed with Lyme Disease almost 3 years ago after feeling joint pain and lethargy for a couple months. We remembered pulling a couple ticks off of him a few months prior in the spring, but didn't think much of it as a rash wasn't noticed."
Not everyone sees a tick or gets a rash -- I didn't, and neither did someone else in my family, but it turned out we both had Lyme and another infection the 'Lyme' ticks often carry.
You say, "His Primary Care doctor prescribed him Deoxycycline for 3 months." This was a good move by the doc, IF the only infection your boyfriend had was Lyme. About half the time, the 'Lyme' ticks also carry other infections that need separate testing (based on symptoms) and often need separate medication.
It could be that he did have only Lyme and no co-infections (but didn't take the meds regularly), or that he also had other infections not tested for. Either is a possibility. Then by not taking the meds as prescribed, things could have become more complicated. Whether it was an incomplete diagnosis or inappropriate medication or insufficient treatment time (or more than one of those possibilities), it is what it is at this point.
You say, "But overall he felt much better until about 6 months later when worse symptoms returned in full force." This could have been a new infection, or one of the other three possibilities just mentioned. Sometimes you just never know. The important thing is what you are pursuing now: a new look at the diagnoses and a new determination of what treatment and medications to take. Good for you both to have pursued just that, by continuing to ask questions and seek answers!
You say, "We have been to MANY MANY infectious disease doctors over the past 3 years and no one believed it was Lymes because he didn't come up positive for the standard test." And right there you have made an important point: the usual tests are often not accurate.
"But he has been steadfast in his belief that he does have Lymes as he feels the same but worse than he did when he was first diagnosed. He has also had high liver levels that come up on his blood work and high blood pressure. We have been told that he has everything from chronic fatigue syndrome, to diabetes to hepatitis c. And we have been told by multiple doctors that Lyme Disease does not exist." It's good that you are able to catalog all these points ... because we are brought up to believe what docs say, we forget that they are only human too, and they can and do make mistakes, esp. in fast-changing areas of medicine.
"He has suffered for so long his symptoms seeming to get worse each month. When he had a fever for over a week ... we got a call that he also tested positive for Lyme Disease." Hurrah for the doc who ordered that test!
"The first appointment we could get with an infectious disease doctor was today and he left sobbing because the doctor told him that Lymes doesn't exist." The problem here may well be that infectious disease (ID) docs simply do not understand or believe in Lyme as a serious and widespread illness. It is a common blind spot for ID docs, and I personally would probably avoid them in general when it comes to Lyme.
"We are at our wits end and would appreciate ANY advice and if any one knows of a Lyme Literate Doctor in the Philadelphia Pa area please let me know." I just searched online for
-- philadelphia lyme disease specialist --
and came up with some promising links.
Remember, there is no test for an MD to take to be called an 'LLMD' or a 'Lyme specialist' -- it is a state of mind and an understanding of Lyme disease and other infections that often come along with the Lyme ticks.
Also, if you have not done so, go to --- ILADS [dot] org --- and ask for names of Lyme specialists in Philadelphia PA and within [20] miles from there.
You say, "I know this disease isn't a myth and I am determined to do whatever it takes to cure this nasty disease." Good for you! Let us know how we can help.
Here is another suggestion: start a *new* post on this Lyme page and title it something like 'Need LLMD in Philadelphia PA area'. That will catch the eye of anyone scanning quickly through the pages.
Hang on, and let us know how you do and how we can help. Best to you both and to your families --
There is much misunderstanding about Lyme in the medical community, and the important thing is to find an MD who really does understand how to diagnose and treat whatever illnesses your boyfriend has. There is a huge split in the medical community about Lyme generally, including how to diagnosis it and treat it. Many of us here were also misdiagnosed or ignored, so we hear you.
The primary care doc who prescribed doxycycline for 3 months did more than many MDs would, but there are aspects of Lyme infection and treatment that do not respond to doxycyline. 'Doxy' can be effective against Lyme, but ONLY if the doxy is given very early in the infection, and sometimes the person may have been infected with Lyme a while back, but didn't feel really awful and so didn't know that s/he was ill and not just run down from overdoing it at work or school. If it happens that doxy is not given very very soon after the initial Lyme infection, the Lyme bacteria will hide in areas (like cartilage) where the immune system cannot 'see' the Lyme bacteria to kill them all.
Sometimes a patient with a strong immune system and a lot of determination can carry on in life, just feeling dragged out for weeks or months or longer, not knowing that s/he has a Lyme infection. It sounds like that happened to your boyfriend -- you say: "My boyfriend of was diagnosed with Lyme Disease almost 3 years ago after feeling joint pain and lethargy for a couple months. We remembered pulling a couple ticks off of him a few months prior in the spring, but didn't think much of it as a rash wasn't noticed."
Not everyone sees a tick or gets a rash -- I didn't, and neither did someone else in my family, but it turned out we both had Lyme and another infection the 'Lyme' ticks often carry.
You say, "His Primary Care doctor prescribed him Deoxycycline for 3 months." This was a good move by the doc, IF the only infection your boyfriend had was Lyme. About half the time, the 'Lyme' ticks also carry other infections that need separate testing (based on symptoms) and often need separate medication.
It could be that he did have only Lyme and no co-infections (but didn't take the meds regularly), or that he also had other infections not tested for. Either is a possibility. Then by not taking the meds as prescribed, things could have become more complicated. Whether it was an incomplete diagnosis or inappropriate medication or insufficient treatment time (or more than one of those possibilities), it is what it is at this point.
You say, "But overall he felt much better until about 6 months later when worse symptoms returned in full force." This could have been a new infection, or one of the other three possibilities just mentioned. Sometimes you just never know. The important thing is what you are pursuing now: a new look at the diagnoses and a new determination of what treatment and medications to take. Good for you both to have pursued just that, by continuing to ask questions and seek answers!
You say, "We have been to MANY MANY infectious disease doctors over the past 3 years and no one believed it was Lymes because he didn't come up positive for the standard test." And right there you have made an important point: the usual tests are often not accurate.
"But he has been steadfast in his belief that he does have Lymes as he feels the same but worse than he did when he was first diagnosed. He has also had high liver levels that come up on his blood work and high blood pressure. We have been told that he has everything from chronic fatigue syndrome, to diabetes to hepatitis c. And we have been told by multiple doctors that Lyme Disease does not exist." It's good that you are able to catalog all these points ... because we are brought up to believe what docs say, we forget that they are only human too, and they can and do make mistakes, esp. in fast-changing areas of medicine.
"He has suffered for so long his symptoms seeming to get worse each month. When he had a fever for over a week ... we got a call that he also tested positive for Lyme Disease." Hurrah for the doc who ordered that test!
"The first appointment we could get with an infectious disease doctor was today and he left sobbing because the doctor told him that Lymes doesn't exist." The problem here may well be that infectious disease (ID) docs simply do not understand or believe in Lyme as a serious and widespread illness. It is a common blind spot for ID docs, and I personally would probably avoid them in general when it comes to Lyme.
"We are at our wits end and would appreciate ANY advice and if any one knows of a Lyme Literate Doctor in the Philadelphia Pa area please let me know." I just searched online for
-- philadelphia lyme disease specialist --
and came up with some promising links.
Remember, there is no test for an MD to take to be called an 'LLMD' or a 'Lyme specialist' -- it is a state of mind and an understanding of Lyme disease and other infections that often come along with the Lyme ticks.
Also, if you have not done so, go to --- ILADS [dot] org --- and ask for names of Lyme specialists in Philadelphia PA and within [20] miles from there.
You say, "I know this disease isn't a myth and I am determined to do whatever it takes to cure this nasty disease." Good for you! Let us know how we can help.
Here is another suggestion: start a *new* post on this Lyme page and title it something like 'Need LLMD in Philadelphia PA area'. That will catch the eye of anyone scanning quickly through the pages.
Hang on, and let us know how you do and how we can help. Best to you both and to your families --
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